Update

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34 Days Post (Liver) Transplant

536 Days Post (Lung) Transplant

I'm sorry it's been so long again since I've updated. I spent most

of my hospital time 2 weeks ago getting out of bed and moving,

so we could keep him at the U instead of them moving him to Gillette

for inpatient rehab therapy. Thankfully, the Rehab doc agreed that

he's complex enough that moving him to another facility wouldn't be

in his best interest.

Through the week and into the end of the week, Dr. talked

about possible discharging the end of the following week (last

week). Suddenly on Sunday he has 's nurse call me to say he

wants me to come do 's dressing changes Sunday night and Monday

morning so he can discharge him on Monday. EXCUSE ME??? I went in

Sunday eve and changed the dressing. I got so upset while doing it

that I was ready to vomit when I was done and cried the whole walk

back to RMH. Monday wasn't much better. told Dr. on

Monday he wasn't ready to go home yet, so he said that was fine, we

could wait.

I also pointed out that it MIGHT be nice to figure out why 's

oxygen levels aren't staying up as well as they should be,

especially when he's sleeping. So pulmonary is working on that. He's

scheduled for a Bronchoscopy on Thursday.

I'm still waiting to hear something from Hem/Onc

(Hematology/Oncology) about whether or not we're going to treat

for the Langerhan's. Jon and I both would really prefer we do, as

it's just going to resurface and destroy his new organs, which I

think is more of a risk than what the chemo will pose to them.

Especially at low dose.

is, so far, suposed to get discharged tomorrow back here to the

RMH. For how long, who knows. His stomach is emptying, although much

slower than it ought. His intestines are absorbing, though not to

full potential. His diabetes insipidus has not yet returned since

the hepatorenal syndrome. Which means no dDAVP shots for him right

now. It may resurface some day, but for now we're enjoying it.

's been in a really good mood since telling Dr. he wasn't

ready to leave. I suppose it's a control thing. He said he wasn't

ready. The doc said okay we'll wait until you are. Great mood since.

I like it.

My friend, from New Ulm (formerly of RMH) has to bring her

son, Zachary, back for a check up Tuesday. So she's bringing her

older son, Cody, with to hang out with and play video games

with him. So that'll make happy. I'm getting rid of equipment

for him. No more commode. No more suction. Got rid of a few various

meds. Several doses a day less than we had.

I think that about covers the majority of the last two weeks. We

have had a major family set back. But this isn't the forum to vent

on that. So I'll do it another place, another time. Just know that I

could use a LOT of strength right now, a great work from home job,

and the patience to deal with everything else in the face of the

newest.

Please know that I love you all, and that we always appreciate the

notes you leave for us!!!

Ami